Fucking March

I tried to read this book on PTSD called "The Body Keeps Score." Long story short, it's really interesting, but keep triggering me so I didn't make it past the second chapter.

The past few weeks have me thinking a lot about the title though.

Last week, for the first time in a long time, I had a full-on, full body, out of control, panic attack. I was hysterical. Will held me while my body was wracked with sensations from events I wasn't actually experiencing. I screamed and screamed.

I sort of took it lightly. As lightly as one can take something like that. It's not like this is new, just not something I've experienced in a while. My panic attacks over the past few years have become something I can manage. This, was a whole different animal. Still, when the my body stopped shuttering I made a joke about Will's snotty shirt, picked up, and went on with my life.

It happened again today.

I texted my ever-patient husband and said: The number of times I've had to tell our children "I can't. I'm just not ok today" makes me feel like complete shit.

I'm not even going to lie to you guys. I poured vodka all over it. I just couldn't go through that again. I couldn't be completely stripped again so soon. I couldn't face the panic.

I've been ripping myself down. Why? Why are you falling apart now? What the hell??

Maybe it's the looming dissertation defense.

Maybe it's the 30 different projects and responsibilities.

Maybe it's the ever-fucking-present terror that your 4 year old will die at any second.

Maybe it's the constant fall-out from trying to help a shattered 12 year old grow that no one sees.

It's probably all of that but in the end... the body keeps score.

Fucking March. It's going to be a bad one.

Until next time....

The Easel

I paint.

I started painting because it soothed the screaming pain in the months after Damon's death. Painting continues to be an outlet for me and, five years after first putting brush to canvas, I'm really beginning to love what I create. I love that almost all of my materials are sourced from resale shops, broken down furniture, and pallets. I love that my "canvases" come with their own stories and that they tell me what they will be in their second life. It feels right and my work is speaking to people. I believe, now more than ever, that art speaks on a very individual level to each person. It speaks to them in their own language and being able to pour myself into a piece that speaks to someone's soul is one of the most healing things I've ever done.

But, as it always is, my particular brand of healing is very messy. There are regularly paint tubes and drying canvases scattered over various surfaces in our home. No one ever complains but clutter makes me a little (a lot) crazy so when I saw a brand new easel for sale on one of my cruises through a local resale shop my desire to keep my house clean combined with my recent success in selling my pieces made me feel justified in snatching it up.

I got home and proudly showed my husband (I always like to show off my "trash to treasure" finds and make him guess how little I spent). I plopped down in the sunroom and went to work putting the thing together. I'm pretty sure the instructions were in hieroglyphics (I seriously wish I had kept them so you could see how unbelievably vague they were). After dismantling the thing twice because I had put pieces on backward I sat on the floor in front of my finished easel and cried. I called my husband into the room and did a Vana White style "look what I did!" He grinned and hugged me "Wow babe!! That's awesome! You didn't even need my help."

Um, Jodie, you are a grown woman. You have multiple degrees. You paint cool stuff. You manage the schedules of your entire family. You're kind of a badass (I know, right?!). Why are we reading about an easel?

Because three weeks ago I couldn't have done it.

Well, maybe I could have but I would have probably thrown something in the process. I would have stomped off halfway through, feeling like I was going to explode, and had to return to it the next day and try again. But what I probably would have done was call my eternally patient husband to finish it the first time I got stuck.

Because I have ADHD.

Two and a half weeks ago I sat in my Dr.'s office with trembling hands on the verge of a panic attack and told him I needed help. I've known about my ADHD since I was pretty young but somehow, while I developed relatively healthy relationships with my other mental health diagnoses, this is one that I wouldn't confront. I honestly think I deeply internalized the notion that ADHD and ADD are not "real." I had heard so much about "housewives" abusing Ritalin and Adderall because they are too stressed and overscheduled. I told myself that I've been pretty damn successful; I couldn't possibly have ADHD for real...

But I do.

And it's real.

I look back now at my life and wish with everything I have that I had done something about it sooner. So much makes sense in the light of this information.

ADAD is definitely not what I thought it was. It isn't how it's perceived or described in popular culture. The best way I can describe some of what it feels like is this:

It's like the inside of my head is a snow globe. Instead of little white flakes that float around if I'm "rattled" I have every single worry, fear, memory, piece of knowledge, random thing I notice, sound, song I just heard, etc. spinning around the inside of my head all of the time. Each individual thing has its own trajectory and they can randomly wink out of existence then reappear in a new location on a new trajectory. For me to interact with the world outside of my head I have to see and hear through this cacophony in my head. I can't possibly explain the extraordinary effort it takes to do this constantly. It's exhausting.

Two and a half weeks ago I took my first dose of ADHD medication and the cacophony stopped. For the first time in my whole life, I felt such indescribable relief.

I can sit and play cars with my Rainbow baby without feeling like I'm going to crawl out of my skin. I can focus on my husband's excited descriptions of his video game conquests and not space out 50 times in 5 minutes. I can be patient. I can sit at my desk and work on the same thing for an entire freaking DAY.

I can spend 45 minutes following hieroglyphic instructions to put an easel together.

I saw my doctor today and he asked me how the meds are working. I sat there gaping at him because I just couldn't possibly explain how completely life-changing those little pills are. Eventually, I managed something along the lines of "It's f***ing unbelievable." He laughed and said "Good, then we won't change anything."

I think we've all heard so very much about how these disorders are "made up" or arguments about how people "just want to medicate difficult kids." I am first in line to argue that our current school system is not healthy for kids and that they shouldn't have to (or be able to) sit in a desk for a whole damn day. I will also fervently argue that everyone gets restless and everyone has trouble focusing sometimes. I used all of these arguments on myself, for years. I have a fantastic relationship with my doctor. He's an exceptional physician who I trust and I was still terrified to talk to him about this.

Why?

Because I had bought into the lie that I can't be both smart and accomplished and have ADHD. Well, guess what? I'm smart and accomplished and have ADAD. Medication has changed my life.

Caution is important and warranted but as I've argued so many times; If you or child had insulin dependent diabetes would you hesitate for a second to make sure you or your child received this medication? No. What if you or your child has dopamine and/or norepinephrine deficiency (the primary neurotransmitters involved in ADAD)?

I grew up thinking I was stupid. I really really did. Now that I know so much more about ADHD what I've learned is that I'm not stupid; I was battling through a deficiency that most of the people around me didn't have. Things that seemed easy to them took monumental energy and a great deal more time for me because I was learning through the maelstrom in my own head.

Now, I feel like I can do anything. I've trained with a massive weight belt around my waist and now I get to run the race free of that anchor.

Easels are just the beginning.

Until next time.

From the couch

I've had to confront the reality that I'm a people pleaser. Not that this is exactly new information, I've really known for, well, ever. I want people to like me and I want people to get along and it causes intense inner turmoil for me if those things don't happen.

Being a pleaser, and a Ph.D. student, and a mom, and a bereaved parent, and a parent of a chronically ill child, and a chronically ill person, and a depressed person, and a person with anxiety and PTSD.... you get the picture. Being a pleaser plus a thousand things that need my attention and energy = exhaustion, exacerbation of depression and anxiety, and a general feeling that I'm always failing.

I'm working on confronting the fact that I'm just not capable like I used to be.

I think I'm not supposed to admit this and damn sure not supposed to accept it. I'm supposed to fight it like hell. I'm supposed to keep pushing and doing all the things and then when I crash and burn I'll be considered a failure.

Honestly, this path is tempting. There's some notion that if I go this direction I've done something I'm supposed to do and somehow proven something.

These thoughts, long stewing in the back of my mind, have been urged to a boil by what seems like nearly back to back illnesses and injuries. I'm supposed to be at work right now, plugging away at my Ph.D. dissertation. Instead, I'm laid up on my couch, unable to do much of anything because every time I move my right hip slides its self right out of the socket and slugs me with so much pain I see stars.

This isn't a random injury either. It hurts a lot more than it usually does this time (which scares me more than a little) but partially dislocating my hip has become par for the course as a person living with Ehlers Danlos Syndrome. So has chronic systemic pain, brain fog, and chronic fatigue.

I'm writing because I feel like crap about being stuck on the couch as if I could somehow just try a little harder and not have a long list of ailments. As if my constitution were stronger it would somehow hold my hip in place. I've been trained to view my physical ailments as failures of character.

What I'm grappling with is the fact that my reserves are very shallow. What I'm capable of giving is severely limited and, now, I have to decide what is worth my limited attention. I cannot be all things to all people. I cannot please everyone. I can't even please most everyone.

I need to somehow learn to be ok with this for my own physical and mental health and because if I insist on running myself ragged my husband and children will get nothing but scraps of the person that I can be.

I am writing this all here, putting it into words publically in hopes of cementing this reality in my mind and heart, in hopes of finding the beginning of giving myself permission to partition my resources, to love and like myself and my body, and in hopes of letting someone out there know that they aren't alone.

Me too.

From the couch... Until next time.

It's possible

Yesterday was my husband’s birthday.

To me, birthdays mean a lot more than a celebration and cake and presents. To me, birthdays mean that I got to spend another year with this person I love. When you only get one, single solitary birthday, ever, with someone you love things like birthdays change in your heart.

If you’ve read much of what I write here, you know that my husband is the rock of this family. You know that he held us together through the aftermath of Damon’s death, holds us together still as the waves swallow me and regularly render me helpless. You know that he held us together when our Rainbow was born premature and he had to leave his wife alone in a hospital bed and follow an ambulance carrying his infant son. You know he woke with me every three hours for months to help me as I struggled to feed our baby from my body, desperate to provide whatever protection I could. You know I adore him and that he deserves it.

What I want you to also know is that it’s real. The crazy, obnoxious, over-the-top adoration I blubber on about here is real. It isn’t a “public face” fabrication or my way of trying to convince myself we are ok.

The reason it matters to me that you know it is real is this:

IT IS POSSIBLE.

It’s possible to be wildly, passionately, soothingly, simply in love.

It’s possible to feel magic in someone’s touch.

It’s possible for that magic to get stronger the longer you’re together.

It’s possible to be someone’s perfect match and for someone to be yours.

It’s possible to fight for your relationship and to win.

It’s possible to forgive, really truly forgive, even really big stuff.

It’s possible to want nothing more in all the world than to be blessedly alone, and to still be wildly in love.

It’s possible to have great sex, often, and for it to feed your soul, not just your body.

It’s possible for true love to start in a bar or a church or a school… and it’s possible for it to start of rocky, really rocky and still be real.

It’s possible to be impossibly irrevocably broken and still in love, still worthy of love, still able to give love.

I really don’t think until my husband and I had been married a good 4 – 5 years that I finally started to settle in and believe this lovely madness wasn’t going anywhere. I finally started to trust that we were going to make it, not just make it, but want to make it, together.

No one ever told me this kind of love was possible, or even real. I didn’t think it was. I didn’t know to look for it, to hold out for the one person that could calm my ever-rolling internal chaos. The one person who is home.

It is possible.

It is possible.

Happy Birthday to the one, murmur.  

The fallacy of bootstrap pulling (I'm pissed and it shows)

I grew up with the very southern mentality that everyone should just pull up their bootstraps and work harder. If you just work harder, try harder, if you're just good, it will come around. Things will work out, things will be good, if you just keep trying.

This mentality is bullshit and its harmful.

See, the thing is there are lots and lots and lots and lots of admirable marvelous people who are busting their asses, trying to keep food on their family's table, trying to keep their babies healthy, trying to get that raise, trying to beat that disease. And it just doesn't effing work that way.

Some people just plain start life a thousand miles behind the privileged, or a hundred miles behind, or ten... And when you start behind you tend to get kicked down a lot more. And when you get kicked down what resources you have managed to scrape together (if you've even managed to scrape any together) are decimated. Emotional resources, financial resources, social resources.

The people reading this who've had generally happy lives, whose (allbeit imperfect) parents raised them with love, who had money to have interesting experiences, who lived in a safe neighborhood, who weren't belittled for their skin color, religion, sex, or sexual orientation, who didn't graduate from college with hundreds of thousands of dollars in debt, who got to go to college, whose children are all alive and healthy, will probably find this offensive, because you don't see your privilege.  You think we should all just try harder.

Well, I graduated from highschool with honors, graduated from college with honors, have 13 years of higher education in, what I am realizing is, one of the most demanding and rigorous disciplines. I have a list of honors I could bore you with but I wont. I did most of my master's as a single parent, still have that boring list of honors. A year into my PhD my child died. You have NO IDEA... you just don't. A year later my youngest was born. He was born beautiful and perfect and his body doesn't work right. His immune system can't fight infection. Still have the boring list and am less than a year away from the highest degree anyone can earn, anywhere.

What prompted this rant you many wonder?

Yesterday we received test results for my Rainbow's vaccine challenge. When you are vaccinated your body responds as if you were infected (this is why you often feel sick after a vaccine). As a result if you ever do encounter the pathogen against which you were vaccinated your body is ready. This is a really big deal. Vaccination takes advantage of the way your immune system naturally works. So, a vaccine challenge tests whether or not the immune system is recognizing and arming itself against pathogens.

His isn't, not even a little bit. His numbers were actually LOWER after the challenge than before. He had zero response. His body didn't react.

I. am. devastated.

I had let myself hope. I had let myself hope that maybe, just this freaking once, whatever asshole cosmic force that hates our guts would cut our baby a break.

I let myself hope. I let myself believe that all that work. All that "being good" would matter.

It doesn't matter.

I always tell my kids that their behavior and choices are about them, not about rules, or what other people think, but about the person they want to be. I believe this and I haven't done the work I've done, tried to be an attentive and loving parent and wife I've tried to be, the trustworthy student and friend, because I want accolades. I do it because this is the person I want to be.

But my above statement holds. You can't pull yourself up by your bootstraps guys. That is the illusion of those who are already up.

When the country loses its mind and thinks its ok to take healthcare away from your immune deficient four year old - you can't effing bootstrap that.

When the country loses its mind and defunds your area of expertise so most of the people you admire aren't finding jobs (meaning your wont either) - YOU CAN'T BOOTSTRAP THAT

When your 19 month old baby dies in your arms and you are never ever right again

When your Rainbow baby has to endure endless pain, and tests, and fear

There is no pulling yourself up by your bootstraps... I know, I've been trying for years.

I'm tired. I'm scared. I'm sad and I want to quit... only there's nothing to quit.


I don't need platitudes, so just don't. Don't tell me its going to be ok, for the millionth time it wont be. Don't tell me to keep my chin up or whatever other stupid, meaningless thing you're thinking about saying that would just make it hurt more.

Just don't.

Well, I'd be happy to

My Papa died very recently. He was one of those very rare people who always meant what he said. There is so very much about this man that I miss. Grief and I know each other well and while this type of grief is clearer I know that the ache will never leave.

But unlike with Damon's death I can look back on my memories of this man with a mixture of the ache and the joy. His last name was Lovejoy and never in all of human history has someone so embodied their name. I wrote for his memorial service "to me, Papa was walking, talking, whistling, smiling unconditional love" and he was. To be the focus of his attention was to be in a place where you were protected, safe, and loved.

There are a million of his characteristics that I hope to embody. His incredible kindness. His unabashed generosity. His smile. His organizational skills! (seriously, his garage is a thing of beauty). And my mind overflows with memories of him, often accompanied by the smell of fresh cut grass (my sister-in-law calls his ability to keep a perfect lawn one of his "spiritual gifts").

Among all of this, something I heard him say every single time I saw him sticks in my mind.

"Well, I'd be happy to!"

I can hear his voice.

If you ever asked Papa to do anything this is how he would respond.

From my boys asking him to get out his stash of toys to me asking for much bigger favors that was always his answer; he would be happy to.

Every single time I heard him say it I made a conscious effort to answer my family this way. I wanted them to feel as loved as this man always made me feel and this phrase, to me, embodied so much of who he was. I failed... miserably.

In my defense it's really hard to say "Well, I'd be happy to!" to the 47th "Mooooooooooooooommmmmmm!!!" Nevertheless, I kept trying, and I kept failing.


In the past few weeks, however, I've found this answer creeping naturally, unconsciously, into my responses. I don't say it exactly the same. I say "I wouldn't have it any other way!" when my Rainbow wants to help make pancakes. I say "Sure thing, love!" and occasionally I manage a "I'd be happy to, baby."

The point isn't the words exactly. The point is that I had the rare good fortune to be loved by a man who meant what he said and always said "Well, I'd be happy to!" I knew he was happy to and I want my babies and my husband to always feel some of the golden warmth my Papa radiated filtering down through me.

I consider this the last of so very many gifts my Papa gave to me.

Papa with the eldest

Papa with Damon

 Papa with my Rainbow

fireworks and sunshine

We met with Rainbow's new(ish) immunologist a few weeks ago. I've been processing the news we got since then (it's not bad).

Rainbow is immune deficient, specifically over the past roughly three years his immunogobulin (antibody) levels have steadily declined. Immunoglobulins are sort of like your soldiers. When you hear about your immune system having a memory these are a large part of that, they do A LOT of important things. You can find some info about immunoglobulins here or here in case you'd like to learn more.

A year ago the three immunogobulins we monitor IgG, IgM, and IgA all declined below normal ranges (A & M were really really low). As a result we switched from prophylactic antibiotics to manage his deficiency to IgG infusions. Thus, while we do monitor his IgG levels they aren't really telling us anything about his native immunity. His IgM and IgA might give us a little bit of insight, however.

Fast forward to two weeks ago.

For the first time in a year his IgM and IgA have both inched up above the lowest "normal" cut off (by about a millimeter). This could be pointing to something positive. The thing is these numbers fluctuate like crazy and if we just caught him on an upswing and they are normally low this doesn't help him. Continue to monitor...

Also, our immuno points out: Just because they are present doesn't mean they are functional.

Crap

We hadn't even thought to confront that possibility... ugh.

But, what I thought was a really scary indication that his immune system (including his supplemented IgGs) isn't functioning well turns out to be the opposite.

Lately every three weeks or so little bit has woken in the middle of the night with a fever (102ish). We fight it and have terror stomach aches all night. Each time (except for the most recent when he had very obvious symptoms) he wakes the next morning with absolutely no symptoms and no signs of what went on the night before.

My fear was that his body was only intermittently detecting some pathogen then sort of "losing" it because one of the primary functions of Igs is to mark pathogens for destruction. Turns out his immunologist thinks this is actually a sign that Rainbow is picking something up then his (+ his supplemented Igs) system is kicking its ass. Wait, what? Really? This is one of the big things I've been processing. I really like the new immuno and he knows his stuff (bonus points because he has a PhD ;)) but this is still something I'm working to accept.

So, the take home from our most recent visit is: Dr is cautiously optimistic and wants to allow Rainbow to "grow out of" his current IgG supplement. Typically the dose is titrated up as a child gains weight. By allowing him to grow without titrating up we will get a slow and cautious clue as to whether or not he is producing Igs on his own. Dr also wants to vaccinate Rainbow against the specific pathogen that killed his brother and see if his body mounts a specific defense (this will again be a vague hint because of his supplemented IgGs). Dr cautions that there are roughly 485028496 things that could go wrong with the immune system and anytime Rainbow gets a fever he has to be seen by a doctor, every time. I'm down with that and now I have a mandate. So, slow and steady, keep testing, keep watching, and keep hoping.

Ok, finally to the big news... the thing I'm constantly turning over and over and over in my head.

Rainbow's immunologist thinks him starting Tuesday/Thursday school next year is a good idea. He's not pushy about it and is completely on board with us never putting Rainbow in school if that's what determine is best for him but... a good idea.

I'm a part of a few support groups for parents of kids with immunedeficiencies and the most common comment/complaint I see is: my kid is always sick/my kid was in the hospital again. These are statements from parents whose zebras are in school.

We've really never even considered him being in a group childcare situation because daycare is a petridish for every single childhood illness (one of my twitter acquaintances refers to it as "daycare pestilence). I used to be all about the "it makes their immune systems stronger." Then my child died of an infection and my mind changed to oh hell no!

But here's the thing. Rainbow is one of the most social human beings I've ever met. He aches for friends. You'd think, because he's been so guarded his whole life, that he would be introverted but he's not. He is fireworks and sunshine. He loves people.

He has spent so much of his life with adults I feel like we are keeping something beautiful from him. Children are magic. He deserves that magic.

So, we have a choice to make. A choice that keeps me awake at night with longing and with fear. What is best for him?

Hubby isn't even in a place where he can talk about it yet. If he doesn't get there by pre-school sign up time it will be a moo point (friends reference). If we aren't both ready to consider it then it doesn't get considered. So we will have to see...

Until next time...

Oy with the poodles already!

Disclaimer: If you do not understand the title reference then I am sad sad sad that you have not discovered and obsessively watched the best show ever made: Gilmore Girls. My most favoiritist show in all the world. 

Oy with the poodles already!

So, pain... I have a bit of a knack for metaphorizing (is that a word? Well, it is now) emotional pain. It's central to my life. It's all day, every day, influences and underlies everything I do. Emotional pain I get.

But this post is about physical pain y'all.

Ho-ly CRAP.

Turns out I likely have a fun fun fun connective tissue disorder called Ehlers Danlos. A few months ago someone set fire to the low-lying-I'll-just-ignore-it pan in my back and joints and put sedatives in my drinks. 

Lets back up a bit so we can do that fun pan in thing movies always do.

When I was about 13 I blocked a shot in a basket ball game and ripped all sorts of muscles in my left shoulder. As a result I was immobilized and had to sit out two weeks of basketball games. At this point in my young life that was maybe the worst thing that could have possibly happened so when I was finally allowed back on the court I emphatically insisted that I felt fine, my shoulder was fine, everything was just fine, peachy in fact.

It wasn't. I managed to hide the pain until my shoulder started randomly falling out of "socket" (the quotes are because the shoulder isn't a true ball and socket and I'm a scientist and I just can't) and my mom was like "um, no." Long story short I had to have my rotator cuff surgically repaired then spend 6 weeks completely immobilized in a "gunslinger" brace (imagine the most obvious back brace you can then add and equally bulky arm piece sticking straight out at a 90 degree angle with an oldschool video game stick at the end; yeah I was cool) then three months learning to move my arm again. I started practicing again before I was released and less than a year later had torn the other shoulder (repeat above surgery, super sexy brace, and PT) and then quickly retorn the first. 

All that to say upper back/shoulder pain was pretty much the norm for me. From that first injury on I don't remember my shoulders and back ever not hurting. It was my normal. 

Follow this with bursitis and tendonitis in my knees (which I wrote off to being a runner), a slipped/bulging disc in my lower back, temporomandibular joint disorder (my jaw locked down completely about two years ago), and "flares" when every thing hurt so bad I couldn't open a pickle jar occurring with increasing frequency and I probably should have clued in that maybe I'm not the normalest human physiologically. 

Turns out I'm not. After two solid weeks of hurting so much at the end of the day that I could barely participate in getting my kids into bed I broke down and talked to my doctor. My likely diagnosis (pending testing and consultations with, you guessed it, a battery of more doctors) is Ehlers Danlos and Mast Cell Activation Disease (maybe I'll write another post about how my food sensitivities nearly put me in the hospital a few years ago but I'll spare you now). 

I had never heard of these conditions, like ever. Last week we went on the Rainbow's doctors world tour (we saw 4 doctors in 7 days in 4 different towns and 2 different states) and it came up TWICE! New neurosurgeon (talking to me) "I was looking at your hands and was going to ask if anyone in your family has Ehlers Danlos." After leaving I realized I was too distracted by the on-going discussion about possible cranial surgery on my 3 year old to ask him: "My hands? Whaaa?" because in this context we were discussing the likely possibility that my Rainbow shares this shitty condition. 

Oy. with the mother friggn. poodles. al-ready.

Oh... and the Chiari Malformation... I may have that, too.

You know what that means? That means that these two debilitatingly painful, dangerous conditions came from me. It means that I gave him this and now I know how painful it really is. I can now look back and see so many times that fit perfectly. So many weird dislocations and subluxations, so much damn pain... I gave it to him. There is no cure, only "pain management." 

All I want in all the world is to protect my children an my very DNA poisons them. Sounds so dramatic but, for the love, it's true and it hurts and it sucks and I'll be danmed if he is going to hurt like this his whole life. 

For the eleventy-gazillionth time she thinks "Why didn't I go into medical research!?"

Signing off from my bed where I am propped up on 6 different pillows so I can whine at y'all from the perfect angle.

Until next time...

Well hello there...

I've heard child death described as an amputation by those trying to find the words to explain how it completely changes your life. I think this is as close as you can get to explaining it in a physical way. Except it's a double amputation performed without anesthesia, you're wide awake and helpless, feeling every single stroke of the blade.

For me, the pain knocked me out, for a year.

I've said before that I was something resembling comatose for a very very long time. I screamed and cried and agonized. I remember very little of that year.

Now, four years later... how has it been four years? I rarely have panic attacks and I can function pretty normally. I laugh and I mean it. My legs are gone forever and the pain never ever recedes but I've learned to function and find moments of happiness.

I find myself hesitant to talk about the good moments because people latch on to them like they are being sucked into a jet engine and refuse to acknowledge the swirling agony that underlies every smile. "I'm glad you're doing so well!" Um.. I'm not doing so well. I'm not all better and I'm so done with a society that glosses over pain and grief and the reality that is death. We will all die y'all. But I digress...

I tend to think I've reached a plateau of learning to live after Damon's death. Just learning to leave the house was a straight up vertical climb. Grounding out panic attacks, having conversations... seriously this was insurmountably hard for a long, long, long time. It was so damn hard to talk to anyone about anything. I could not do normal. I've worked so hard to get to a place where I can converse with other human beings, take my son to the park, laugh at my husband's terrible jokes, lecture a classroom full of undergraduates, present at scientific meetings... all of these took concentrated, purposeful effort to recapture, and still do, every time.

So, it has been a weird, uncomfortable surprise to realize that, without purposely striving for it, I've reaccessed a part of me that I didn't even realize existed. Now that this part of me is growing I remember, of course, but I didn't.

I don't know how to explain what this new/old thing is other than to say I want to do things... with people.

Um... yeah, everybody wants to do things Jodie.

Nope, not everybody. Not me, not before about a month ago. If you saw me doing things it was because I needed to do those things. There was a conscious effort in doing those things. I need to do this for my career, I need to do this for my kids, I need to do this for my husband, I need to do this because I care about this person and they've asked me to participate in the thing. I didn't want to. I wanted to go home, always. I wanted to go home and be safe inside my walls with my little family and dis-a-freaking-ppear.

I first noticed this weird new/old sensation when I was at TJ Maxx a while back. There were a few women there, obviously a group of friends just out spending the day together, and I ached. The moment was weird and disorienting. I didn't understand what I was feeling or why I was feeling it. Things like this kept happening, pictures of friends hanging out on social media (I know, it's the devil but there it is), mentions of going out to dinner, or some event participated in and I ached.

I can remember my close friends (most of them very far away physically) saying things like "I miss you" over the past four and half years and not being able to access those emotions. That part of me just wasn't there for me yet. I honestly didn't think it ever would be. This weekend when texting with a friend, who has undoubtedly considered just throwing her hands up in frustration with all the effort she has put in to staying in the relationship with almost no reciprocation, and I realized that I miss her.

I told Hubby this weekend that it's as if this part of my personality lay dormant longer than my consciousness and only now awoke to realize I've stranded it on  deserted island. Because I did. I withdrew from everyone and everything. There is nothing wrong with what I did. I had to but it has certainly left me very alone and entirely unsure of what to do about it. The fact remains that I'm super-dooper-crazy levels of broken. Even without the broken I'm super-dooper-crazy levels of introverted. Long story short, people freak me out, people in groups horrify me. Still, I want to do things... with people (or maybe person, maybe no more than 3 people at a time, did I mention I'm broken?).

So there it is world. I'm lonely... weird.

Until next time...

Where is that white horse?

You know, I really didn't expect it to go this way. Even after a divorce, ensuing pain and drama, figuring out how to do grad school as a single mom... That was hard but I still believed things were going to be good.

And for a while they were. They were really really good. Then it all came crashing down. I got knocked down so hard I didn't even begin to wake up for a year. Now, I walk through this life with a spear through my chest. I hurt. Always I hurt. There is no moving on after a child dies. There is learning to live around the anguish but it never goes away. It never diminishes. You just get used to it and you learn to function.

My rainbow baby brought light back into my life and we have fought for him to live from the first moment he entered the world. He was born unable to breathe, into the world before his lungs had developed the surfactant that would allow oxygen into his bloodstream. His brain wasn't developed enough to keep telling him to breathe and his little heart was so confused about what it was supposed to be doing.

We fought. We slept on the couch in his room, we maneuvered IVs and monitors and tubes so that we could hold him. We just sat and held him.

Every moment of his life that child has been a light.

As he grew it was clear that he was exceptional. He loves everything and everyone. He smiles, he laughs, he runs and plays. He lives. I wish I had words to describe the light he carries. The light that beams from his little heart.

All I want in this life is to protect that child.

Because of the financial strain (impossibility) of paying for the infusions he needs to survive we agreed to join a clinical trial. The trial would supply 6 months of free medication in exchange for data. That data is collected by blood samples.

We knew there would be a lot of blood samples. We had no idea how traumatic they would be for him, how hard it would be to hit his veins, or how much they would scar.

This week, after months of blood draws, he was supposed to go through "PKs." This means his blood was supposed to be drawn twice on infusion day, then the next three days in a row, then again every other day for two more draws.

Long story short, he is too scarred and too traumatized for them to get blood. He becomes hysterical as soon as the tourniquet is put on and kicks and screams through the whole thing. He is scared. After the first attempt on day three (after failure on day 2) he was crying and saying "I want to hold you!" I had had enough. I grabbed him, told everyone we were done and booked it out of the room.

Today, on a conference call with the immunologist I was told that the reason they can't get blood is he is moving too much and "hamming it up" because I am in the room. Not because he is scarred from all of the blood work. He clearly isn't genuinely freaking out because the three year old child has been stuck more times than most pin cushions. No, it's me. Despite the fact that I was holding him the only day they were actually able to get blood.

I was so pissed I almost missed the lecture about how we had gotten thousands of dollars in free medications and we have to follow the rules. We made a commitment, blah, blah, blah... (by the way, from the beginning it was made clear that we could quit the study at any time).

To stay on the study and continue to benefit from the generosity of the multimillion dollar pharmaceutical company Rainbow would have had to start the week of PKs over. That would have been 5 sticks in 4 days, again.

So, we are off. We are off and looking at an uncertain future. We are off and hoping for insurance approval so he doesn't have to go without medication, without protection, and I have a strong feeling his doctor is in no rush to get that done quickly.

I am terrified and despondent and worried and hurt that people I thought were my allies were more interested in using my child for their own gains.

This in addition to the knowledge that one of the people most dear to me in all the world will leave this earth in no more than a year and the memory of the person who loves me more than I could ever fathom will soon be gone has me feeling like there will never be light again.

I asked on Facebook today "Is adulthood just near constant pain and fear for everyone or are we just special?" Today, I feel like laying down and never getting up again. I'm tired of being "such a fighter" and "so strong." Do you know what I would give to have a simple, normal, scariest thing that happened to our child growing up was a broken arm, kind of life? What I would give to be able to believe that the world is safe?

I'm so sad, desperately sad, and there is no one riding to the rescue.

Until next time...

Where do I start?

We saw the first neurosurgeon a few weeks ago. He feels strongly that Rainbow's headaches can be managed pharmacologically rather than surgically. This is very desirable because surgery is very very dangerous for Rainbow. We have to see a neurologist to get started figuring out if there is a medication that will work for him. Neurologist isn't scheduling until January. Called around, pretty much everyone who is taking new patients is scheduling roughly that far out. We see the next neurosurgeon Oct 26th. Rainbow is no longer allowed to play on trampolines or in bounce houses because his Chiari Malformation makes those activities dangerous. His trampoline is his favorite thing in our back yard. Suck.

Additionally, Rainbow has a "malformation" of his back (his musculature is very asymmetrical and his spine is slightly "bent"). We showed this to his neurosurgeon and he said "Yeah, that's weird. He needs to see an orthopedist." Is anyone keeping up with the doctor count? Appt with the orthopedist in a few weeks. He also has symptoms the neuro doesn't think are associated with his chiari and may be autoimmune (Pediatric Rheumatologist for that one, add another).

Last week Rainbow had a random (very low) fever, no other symptoms at all. We consulted with his immuno and it resolved on its own and we thought "huh, weird." Last night he woke up freaking out because his head hurt (not really all that new) but when I went to put my hands on his head he was burning up. His temp was 102. We spent a good amount of time on the phone with his immunologist's office (the on-call doc was new to us and was freaking awesome) and three hours on the ledge of "which is more dangerous taking him to the ER or keeping him home?" It took ibuprofen and acetaminophen to break his fever but then he slept from 3am - 7am. Woke up a little grumpy but ate and had no fever.

Dr D's (his immuno) nurse called at 8:15 "how soon can you get him here?" Um... crap, that's not terrifying.

His immuno did a full updated history, spent an hour with us, did a full exam, and.... nothing. Like, seriously, nothing. He doesn't even have a runny nose. That probably sounds like a good thing but to us it's scary. We don't know what we are dealing with.

She ordered bloodwork. Being the boyscouts that we are we were prepared with this numbing cream (don't leave home without it). So, we slathered it on and waited for it to do its work. We went to our usual blood draw lab (how screwed up is that, these people know us on sight) and Raz screamed and screamed and screamed. The phlebotomist hit a vein twice, I saw it, the blood wouldn't come. The phlebotomist's acted like this was the weirdest thing they had ever seen, awesome.

I slumped down to the floor and called his doctor. She didn't want him poked again. He's too worn out. He needs to hydrate like crazy and we will try again tomorrow. If it doesn't work we will have to go to the hospital where they have ultrasounds to do this...

He is sleeping now.

The Neurosurgeon

I do this thing when I'm freaking out. I research. I read and read and read and read and look up terms and read some more. In preparation for this appointment I read every paper this neurosurgeon had published in the last twenty years. I also read a bunch of related papers.

I think I do this because it makes me feel like I have some semblance of control over the situation, and because I'm a scientist. Research is what I do.

The thing is, in all of these papers, cases where Chiari Malformation was successfully managed non-surgically were never mentioned. We went into this appointment certain we were looking at an inevitable neurological surgery, on our immune deficient three year old. On the drive there we were both jumpier than a long tailed cat in a room full of rocking chairs.

So. Much. Fear.

Then, a crazy thing happened. We were given hope. We were given hope that our child may get to live a normal(ish) life without anyone ever slicing his head open...

We spend A LOT of time in doctor's offices. While we've developed strong relationships with Rainbow's regular doctors and feel heard by them anytime we see a new specialist we brace to be rushed and brushed off. It's exhausting and frustrating and infuriating. Dr. Mapstone asked tons of questions, examined Rainbow, then sat with us comfortably in absolutely no rush and talked with us about his evaluation. He took Rainbow's immune deficiency very seriously and factored that into his decision about whether or not to recommend surgery. He answered every question we had honestly. We felt heard and we felt that this doctor was going to make decisions with Rainbow's quality of life and health as his foremost concerns.

The bottom line is that there is a very strong possibility that we will be able to manage Rainbow's Chiari Malformation medically, avoiding surgery, possibly forever. If we can, working with a neurologist, find a medication that manages his pain without unacceptable side-effects then he will have an MRI once a year to evaluate his Chiari and go from there. The doctor made it very clear that if his pain cannot be managed or if he develops other symptoms Rainbow needs to come back to him as soon as possible.

We have a plan.

There are so many unknowns and this neurosurgeon was also very upfront about the controversy in his field regarding the best course of treatment for Chiari. Some of the other neurosurgeons with whom we've consulted are more aggressive in their treatment and we still have an appointment at Dallas Children's next month.

We will be adding three more specialists to his team to evaluate an apparent spinal malformation, to possible remove his "huge" tonsils, and to determine if he has Ehlers Danlos Syndrome or possibly some other condition causing the odd sensations and pain in his limbs.

But... No one is going to be cutting his head open in the foreseeable future and I'll take that.

Until next time...

Eff. Word.

Today Rainbow had an office infusion. We infuse 3 weeks a month at home, the 4th week we have to make the trek to a nearby town, endure a blood draw, and infuse at his immunologists office. We don't usually see his doctor on these monthly sojourns. He has a separate appointment with her every three months or more frequently as needed.

I was running behind the hubs and Rainbow and as I walked into the infusion room hubby looked at me and said "Dr. D is coming to talk to us."

Eff. Word.

That's not good. That's never good.

The thing is just two days ago Rainbow underwent a sedation MRI. His immunologist and a neurologist who spent all of 20 minutes with us (not a fan, in case you can't tell) both suspected he had a certain condition. The MRI was to determine if he did.

He does.

Rainbow has a Chiari Malformation.

His increasing number of migraines, he whole body aches, his frequently "cold" hands and arms... because there is something wrong with his BRAIN.

For ****s sake! Are you serious?!

The treatment is decompression surgery. They will have to cut open my three year old's skull and through his meningies to relieve the pressure of his swelling brain and provide the space for his cerebellum to lift out of his spine.

See cussing above.

We're seeking appointments with at least two Chiari specialists. As much as we are desperate to fix this we are more desperate to be absolutely certain every question is answered, every base is covered, and we secure multiple professional opinions. So, we are likely on a months long journey to major surgery.

Eff. Word.

Until the next crisis...